30 March 2015

I am very passionate about online safety and anti-bullying, especially when it comes to people who look different. One of the reasons I held off sharing a photo of me for so long during my early years of blogging (from 2001) was because of the fear of how it might be misused. Ridiculed. Ogled. Used in inspiration porn and "one like = one prayer" posts. Shared en masse. And it happened to me in 2013.

Being involved in the Ichthyosis and disability community, I see a lot of parents posting photos of their children at their most vulnerable - when they are incredibly sick.

I understand that parents are desperate for answers, treatments and even cures. And I understand the need to connect with others in similar situations online.

While people have the best intentions when looking for diagnoses and treatments for their children, I strongly encourage them to consider the photos they post online. Children have no choice in where their photos end up or how they're used. Talk to a doctor, email a trusted friend, but don't put pictures of your child in pain or naked online - especially when they're already vulnerable. I'd hate to see little ones - already in pain - have their photos misused.

In September last year, I saw a very concerned mum - desperate for answers about her little boy's skin condition - post a few photos of him in a public Facebook group. Her son's body was bloody, in severe pain and he was naked. While she was looking for support and advice, and understandably quite distressed, I urged her to remove these photos of her son from the group. She did, fortunately. I can't imagine how this child would feel if he discovered these photos when he's older.

I know parents are proud of their children, and worried for them too. I encourage them to share a photo of their children looking their best, not their most vulnerable. Consider their digital footprint.

The internet is a fantastic place to get information, advice and support about treatments and the social aspect of a chronic illness or a disability. I blog both to connect with others who have a similar skin condition to mine, and to provide advice to and hope for others who are living with the condition by sharing my story.

I share a lot of myself on my blog – intimate details of my skin condition, and the emotional impact it can have on me. I’m comfortable sharing photos of myself online. I’m aware of the risks. But I hadn’t always been confident to put my photo online. For a long time I was scared that my photo would be ridiculed on the internet – misused and picked apart by cruel strangers. It was only when I found strength and support in the community I’d developed from blogging that I was comfortable to share photos of when my skin was at its worst. It was eight years after I started blogging.

In December 2013 my fear came true. Thousands of people visited my blog because someone had posted my photo on Reddit to make fun of my appearance. I woke up to 3000 hits on my blog and around 200 comments from strangers – (mis)diagnosing me, mocking me and telling me I should be dead. It was pretty hurtful.

The trolls on the internet found my picture and I fought back with awesome!

Instead of fighting back with anger, I fought back with awesome, writing a calm reply detailing my experience with Ichthyosis and directing people to my blog so they could read about the real me. I did this so they would be reminded that I am indeed a real person not for public shaming. I noted that, while strangers were saying hateful things about me behind their computers, I was content in my lover’s arms.

My response to the Reddit thread generated so much support from strangers around the world – even a half-hearted apology from the original poster. People told me they went to that thread to gawk, but instead they learned something. No one expected I would confront these bullies so publicly. I blogged about it and the story made local and international news. A bad situation had been turned around by my positive response.

The Reddit experience reminded me of how public the internet is. I am cautious of how much I reveal as a blogger – mindful of my words having an affect on my family, my fiancé, friends and my employer. I ask permission before I write about someone else. And I carefully select what photos I upload to my blog and social media.
How much do you reveal online?

I belong to a few support groups, which are fantastic knowledge-sharing resources and places to meet friends who just “get it”. This condition is very rare, and so finding people with it is such a relief. But sometimes I worry about how much parents reveal about their children’s illness online. Desperate for advice about treatments and diagnoses, they post photos of their children at their sickest; their blistered skin and body parts on show for hundreds of strangers to comment on. Parents reveal stories of pain and private moments – things I’ve experienced that I tell no one apart from my doctor and my parents. Fortunately, most of the comments on these queries are positive and sympathetic and offer good advice. But I wonder how much say the children have in their photo being shared so widely. Wouldn’t it be better to take those photos to a doctor, send or email them or private message a trusted friend who has had a similar experience?

Some of the support groups are public and journalists lurk to get a sensationalist story. The photos are available to be saved and distributed – just like my photo was. Children are vulnerable and their photos are misused. There are awful memes mocking illness, disfigurement and disability circulating on the internet. My blog has since been referred to in ridiculing threads about my condition – and I cringe thinking about what’s being discussed. There are pictures of innocent babies with the same condition as me being pulled apart through hateful words online. I’m really glad the internet wasn’t around when I was a child and that, to an extent, I can control how my photo is used.
It’s always best to get advice from a doctor – don’t post a photo that reveals your child’s identity

“When it comes to wanting advice about children’s illness, it is best to seek help from your own doctor,” says Martine Oglethorpe, a counsellor and expert in the way technology affects families. “If you are using support groups for information, keep your photos to a select few that you know and trust and only email or direct message photos to these people. If you want to post photos about a certain condition or want support or advice, make sure photos do not identity the child or show their face.”

“Whilst the online world can be a great source of information, connection and support, we must always remember that nothing is ever really private. It is imperative we remember that, especially when it comes to posting photos or details about out kids online”, she adds.

Parents, please consider how much you are revealing about your child’s condition online, and whether the forum you’re posting in is public. Consider how your child would feel if they knew how many people read about or saw pictures of their very private moments. Would they want the whole world to know what they look like in pain? And will it come back to haunt them in years ahead? If your child is old enough to understand the internet, ask permission to post their photo and tell them about who might see it (the good people and the bad).

Chances are you already take precautions about posting personal information about yourself and your children online – so why should photos of them at their most vulnerable, and intimate details of their medical condition and be any different?

(I found an excellent resource for online reputation management - check out Think U Know How. Also a mother spoke out about a meme created from her child's picture here.)

28 March 2015

For many years, my mum seemed annoyed when I sat around doing nothing. Now she's telling me to sit and do nothing. So I am. Listen to your mother. Doing nothing is wonderful.

It's a year this weekend since I went overseas. Gosh that time has flown. In the spirit of doing nothing, I finally transferred the photos from my camera to my computer. So nostalgic. Lucky I took a photo of EVERYTHING I ate.

I realised that since that trip, I've had very little time to just do nothing. I've been on the go for a year. And so it was so nice to reflect on the photos, finally.

Here's the view from the Viaduct in Auckland, NZ. I am sad to have only taken a few photos in Auckland - because it was a pretty city.

And this amazing view behind me in Sausalito, USA.

The ferris wheel at Navy Pier, Chicago USA.

And a view of Central Park, New York City, by horse and carriage.

Such beautiful memories. I have a few travel posts coming up - it's been really nice to reminisce.

27 March 2015

I know that many of my readers have disabilities, or are parents, support workers or staff within the disability community. And disabilities come in many forms – physical, mental, cognitive, temporary, permanent, hidden and visible. And one in five Australians have a disability. So I want to ensure my blog is accessible for many readers as possible. Here are nine tips for a more accessible blog.

I realise that I don't follow accessibility guidelines as well as I should, but I want to try as hard as I can to make it easy for everyone to read my blog.

Accessibility guidelines also make it easier for readers without disabilities to read a blog – they might have slow internet access, or are time poor, or use the internet in the way that works for them. Web accessibility has the power to broaden your audience - the easier it is to read your blog, the more people will read it.

Alt-text (alternative text) provides textual context to non text components of a website. It is used to describe the picture, and is read by screen readers. WebAIM describes alt-text:

“Alternative text serves several functions:

• It is read by screen readers in place of images allowing the content and function of the image to be accessible to those with visual or certain cognitive disabilities.

• It is displayed in place of the image in browsers if the image file is not loaded or when the user has chosen not to view images.

• It provides a semantic meaning and description to images which can be read by search engines or be used to later determine the content of the image from page context alone.

The key principle is that computers and screen readers cannot analyze an image and determine what the image presents. As developers, text must be provided to the user which presents the CONTENT and FUNCTION of the images within your web content.”

This is how I input alt-text in a Blogger draft (other content management systems are similar):

Step 1: Insert photo, and then hover over photo, click it and select 'properties'.

Step 2:Type description and content of image in alt-text field of image properties box. Click 'OK'.

“Images are more difficult than text for search engines to understand. As search engines crawl web content, alt tags help them comprehend the images and related webpages. If you include alt tags that follow best practice, you will increase the chance of search engines returning your images in search queries…Furthermore, for images that are linked, search engines treat the alt tags similarly to how they treat anchor text in text links. And as you probably know, relevant links contribute to search engine rankings.”

This is proof that web-accessibility isn't only for people with disabilities!

Make hyperlinks meaningful

Ensure that people know what website or content they’re clicking to by making hyperlinks meaningful. Instead of hyperlinking ‘click here’, create a hyperlink that reads ‘meaningful hyperlinks’ (and you can click there for more info!).

Caption videos (and transcribe audio files)

If you create vlogs, caption them! This ensures the Deaf community can access them too. YouTube has instructions on how to caption videos.

And if you podcast, consider having a transcript or a summary of the conversation on your blog.

“However, this combination is not ideal for all users. Users with very low vision may set the background to black and the text to white or yellow. Users with dyslexia may set the background to an off-white color or light yellow, with black text. Some people with dyslexia lay a clear sheet of tinted plastic over the screen in order to read more effectively. Web developers cannot control for these user behaviors, and they do not have to. Users will do what they need to do, and what they are accustomed to doing, in order to read. The main concern for web developers is to ensure a high degree of contrast for the general population of readers.”

(While I'm not vision-impaired, I am sensitive to light and colour, and reading white text on yellow backgrounds or coloured text on light or dark backgrounds is really difficult for me.)

Use a simple font

You might want to consider the style of your font too. I like reading Sans Serif fonts like Arial and Calibri and Helvetica on screem, and like it when fancy fonts are used sparingly.

Use real text instead of text within graphics (and if you do place text within graphics, ensure you insert alt-text into the graphic), select simple fonts, don't use too many fonts, avoid small font sizes and avoid blinking or moving text (this might cause seizures).

Some readers can't leave comments if a comment form has Captcha on it. Captcha is a series of letters and numbers displayed as an image, and the user types this code after the comment to ensure they're a a real person. Captcha is often used to keep spammers out. I want to keep the lovely readers in, and so I don't use captcha out of respect for them.

Consider removing Captcha and variations of it. Moderate your comments if you want to prevent spammers. But realise that Captcha makes commenting very hard for many readers - with disabilities and without!

And you might also have a contact form or link to an email address in addition to blog comments - just in case it's impossible for some readers to leave a comment, or if they don’t want to leave a comment publicly.

Include trigger warnings and support services

Some topics may be triggering (cause post traumatic stress symptoms) for readers. For example, stories of violence, discrimination, self-harm and eating disorders might bring back traumatic memories for readers who have had similar experiences. I suggest you include a sentence at the start of the blog post, preparing readers for content that might trigger them. I included a warning at the beginning of Sarah’s story of surviving domestic violence.

I wrote: 'This post contains accounts and graphic photos of domestic violence. If you or a loved one are in immediate danger, you can contact 000, or you can talk to the crisis lines listed at the bottom of this post.'

And at the end of the post, include links to support services like LifeLine or Beyond Blue and domestic violence or eating disorder support services.

More resources:

I know there is a lot more to accessible websites than what I've covered here. You might like to check out the following resources for more information.

25 March 2015

This man is the most amazing, caring, gentle affectionate and funny man I could have hoped for. Last week I said to him that I think, if it’s possible, I’ve fallen even more in love with him in recent weeks. Maybe it’s because of the interest he’s taken in the wedding planning, or talk of travel and family, or the way we can laugh and laugh at our combined silliness. It could be the way he looks at me so adoringly, or how he's always nice and sees the best in people. It could be the lessons he gives me in slowing down. "Never rush a huggle”, he tells me, ensuring we have a lingering hug at least once a day. So beautiful. I feel like I could burst with love and happiness.

The other night, when this photo was taken, I was speaking at an event. He wasn't well, and nor was I. I saw him fading during my speech. He apologised for not taking any photos. And I gave him some panadol and felt his forehead for a fever a lot. I suggested he go home and I get a taxi, but he said no, he wanted to support me there.

For our engagement anniversary, I want to tell you our engagement story. There's a bombshell!

I was about to embark on a lengthy overseas trip that I’d booked before I met him. It was hard to be outwardly excited knowing how much we’d miss each other - and knowing that seven weeks apart would be more fun for me than him, given I was sight seeing and he was at work. A couple of weeks before my trip, some friends of mine came to visit. They hadn’t met Adam before, but soon got along like old friends. We went to a local Italian restaurant and had a great meal. As we drove them back to their hotel, we joked that our local strip has everything we need for a local wedding - restaurants, a bridal shop, hairdressers, florists, cake maker, shoe shop, photographers and dry-cleaners. That conversation continued when we got home, And Adam reminded me that I didn’t have to wait til he proposed to me (even though he was dragging me into jewellers to look at rings!). And the idea was planted. I bought a men’s ring online that night.

It felt right for both of us.

We grew closer in the week leading up to my departure. The Monday night before I flew out, I told Adam I was so lucky I gave him a chance, that I couldn't have expected him to know everything about Ichthyosis when we'd just met and I understood why he was apprehensive about meeting me. I also told him that he's taught me that kindness is the best attribute and I wanted to spend the rest of my life with him. I gave him this in a letter (written on my iPad with Bob Evan’s Wonderful You playing). The letter said I wanted to marry him. I gave him the ring (but it was slightly too small!).

That's right. I proposed to him.

We shopped for a ring for me after work the next day - rushed by the parking meter but Adam didn't care, he wanted to get the ring right. After all, it is to be worn forever! I told him that I only wanted something we could afford. I chose one, a perfect one. And he put it away, telling me that the proposal could happen any time before I left for my trip. After that, we went to the laundromat because the washing machine was broken. Romantic!

I didn't have to wait long! That night he asked me to relax and write while he cleaned the kitchen. I was writing frantically and watching the premiere of a show TV, and he came in with his hands behind his back. He stood right in front of the TV, blocking my view! He got down on one knee and said "will you marry me?". I said yes, and then laughed telling Adam it was so unglamourous - I was in my pyjamas and I had missed the TV show!

I called my parents, and Adam called his. Dad said that he hopes the wedding isn’t going to cost him much! I reminded him that I am his only child who thought she’d never marry! Ha! And then we texted those close to us, and saved it for social media until the next morning.

We exchanged Adam's ring a few days later, and he proudly wears his man-gagemnt ring.

I hadn't given marriage much thought until Adam came along. When we looked at rings in jewellers windows, I insisted I wanted a small and simple ring. I chose a simple ring - but much larger than I imagined - it is 1.25 carat Tiffany-inspired princess cut ring. And even a year later, I can't stop looking at it sparkling!

But it's not about my ring. It's about our life together, supporting each other through the hard times and celebrating the good times.

Gosh I love him. It’s just under a year until our wedding. And I can’t wait!

My parents adore Adam like their own son. Mum told me that our engagement date falls on her late aunty's birthday - Ma Josie was the woman who raised my Mum. That makes the day all the more special.

23 March 2015

I first came across Karen Crespo's awesomeness on A Mighty Girl in September 2014. I contacted her to tell her how much I admired her, and we becomes Facebook friends. When Karen sent me this post through last month, I googled her to find some relevant links, and she happened to be on A Mighty Girl again - that same day! Karen made history in 2014 by becoming the first amputee missing four limbs to feature in New York Fashion Week. One giant leap, hey!?! Karen is a game changer.

I am so lucky to be able to share her story with you today. Meet Karen.

"My name is Karen Crespo and I am 31 years old. I am originally from Manila, Philippines, although, I live and grew up in the suburbs of Los Angeles, California. I have a degree in Nursing so I used to work as a Registered Nurse at a Los Angeles hospital. I am interested in a lot of things people my age like to do such as hanging out with friends, going to concerts, going out to dinner, traveling, and just enjoying life. I am passionate about volunteering to help others in any way I can. I am involved in many organizations such as the National Meningitis Association here in the US and various amputee organizations.

In December 2011, I contracted a devastating blood infection called bacterial meningitis or meningococcemia. Due to this debilitating illness, doctors gave me a less than 10% chance of surviving. In order to save my life, doctors had to amputate both my arms and legs. I ended up having a blood clot in my brain, 2 mild heart attacks, respiratory failure, and kidney failure so I was on dialysis. Besides my amputations, I lost part of my ear, hair, nose, some of my hearing, and I have numerous scars on my body. I am now living my life dependent on wearing prosthetic arm and legs to walk and to do functional tasks.

My life now is very difficult since a lot of times I have to depend on others for help. For the first 28 years of my life I was used to living my life a certain way and then all of sudden everything changed. It is definitely very challenging to adapt to living without my limbs. I feel as though I took a lot of things for granted before such as walking on the sand at the beach, touching or holding things in the palm of my hand, and so much more. Alot of people don't realize how hard it is to walk with prosthetic legs. It's like walking on stilts all day where even walking five steps for getting up from your seat can be very exhausting and challenging.

The biggest challenge I encounter being a quadrilateral amputee is relearning everything so I can be independent again. Relearning basic things such as bathing, eating, dressing myself, and other activities of daily living was and still is extremely challenging. What used to take me 5 minutes to do can now take me 30 minutes so certain tasks can be very frustrating. It is also very difficult to rely on others for help especially because I am an adult and I was very independent before all this. I used to live on my own, work a full time job, pay my own bills, and now everything has changed.

The biggest achievement I encountered since I contracted meningitis is walking the runway during New York Fashion Week. When I first came home after 5 months in the hospital I was embarrassed and I did not want to see anyone. I would have never thought I would be courageous enough to strut my stuff down the runway during fashion week. Once I stepped on the runway platform, it was like I had an epiphany and all of a sudden I realized why I was given a second chance in life. I feel as though my purpose in life is to inspire others and be a role model for people who have disabilities and even for people who don't, but who are just going through rough times.

The overall biggest achievement I probably had throughout my whole lifetime is overcoming both the physical and mental challenges of losing all my limbs. Staying strong and being motivated to make myself better after I became an amputee was not an easy task. It is still a learning process and like many others, I have good days and bad days. Learning how to walk was not easy, learning how to drive again was not easy, but I still kept on pushing through. I knew I couldn't just sit at home and feel sorry for myself.

I couldn't of done all of this while staying positive if it wasn't for my faith and my close family and friends. My mother actually played the biggest role during my illness and rehabilitation process. She quit her job to be my full time caregiver and sacrificed so much for me. My mother slept in an uncomfortable chair next to me every night during my 5 month stay in the hospital and the 7 month stay during physical rehab. Without them, none of this would have been possible. They motivated me to continue to stay strong for myself and taught me that it is okay to cry during times of frustration or sadness.

If someone who looks different or someone that is not happy with their appearance asked me for advice I would tell them to stay positive and humble while keeping their head up high because everyone is different. No two people are the same and that's what makes us unique. What is the real meaning of "normal" anyway? If people are staring because a person looks different they are probably just curious because they have never seen anyone in that particular type of situation. I think the best bet to do is to say "hi" in a polite manner and ask them if they have any questions. A lot of times people will be taken back you asked them a question, you are willing to talk about your situation, or that you are so positive about it. If I can do it so can you.

I would tell my younger self to enjoy life, not work so hard, and to maintain a healthier lifestyle. Although, I did take care of myself and I did not smoke or do things to really jeopardize my overall health. But I feel as though I could have worked harder to maintain a better lifestyle and perhaps I would have never contracted meningitis. I was definitely a workaholic ever since I was old enough to work and I probably could have slowed down as I got older. Life can flash us by and I feel like the older I get, the faster the days in the year go by.

The biggest turning point in developing my self-confidence was definitely walking in New York Fashion Week. The motto of the fashion designer I modeled for Carrie Hammer, was "role models, not runway models." It was therapeutic for me because after the show so many people who had issues with themselves contacted me and told me how I helped them realize their lives weren't that bad. It made me re-evaluate my own life and realize I need to love myself."

20 March 2015

On Wednesday some friends and I saw The Freak and The Showgirl at the Melba Spiegeltent. It was fabulous disability-burlesque. Wow. I don't think I was quite prepared for the level of nudity and barrier pushing. But it was highly enjoyable.

The Freak and the Showgirl stars Mat Fraser (from American Horror Story) and his wife Julie Atlas Muz (former Miss Coney Island). It challenged my thinking around freak shows (Mat said they're empowering and gave people with disabilities financial freedom), and made me uncomfortable at times (there was a part where Julie held a gun and I was scared!). But that's what good art does, right?I wrote about Mat last year after seeing him and Julie in Exposed. I really like how he's taken control of his disability and image and mixed the shock factor with pride.

I was one of five invited on stage to wiggle my bum during the show. I got a slap on the arse from Mat. And (thank GOD) I missed being involved in a naked beer orgy on stage by this (--) much. Mat wrote to me after the show, thanking me for being brave enough to twerk on stage. Here's a video about the show from The Age (contains nudity). Enjoy!

The Freak and the Showgirl is playing in Melbourne on 21 and 22 March. Tickets here. Strictly 18+.(I paid for my own ticket and drink, and haven't been paid to write about the show. I just really enjoyed it.)

Since that post, I've learnt it's not about how many people visit my blog a day, but the difference I can make to just one person through sharing an authentic, engaging story on my blog.

So many people have told me they read my blog and now have hope for them or their child, that they're no longer alone, and that they feel empowered to tell their story. I've met some amazing people through sharing my story of living with a rare severe skin condition and visible difference.

I've fostered a supportive, inclusive and educated community - and soon I'll be bringing that community from on screen to 'real life' in Australia's first meet for patients and families affected by Ichthyosis. More than 70 people have registered - eager to make friends within the Ichthyosis community. People believe in me because of my blog, and they've donated money and products to support the event. For that I am so grateful.

Thanks to The Awesome Foundation Melbourne for believing in the Australian Ichthyosis Meet to throw it a $1000 grant, and to all of the individual financial donors and to the companies who have provided products for the goodie bags. I can't wait to reveal who has come on board!And thanks to the Ichthyosis patients and families for getting involved, helping out and seeing the importance of a social meet.

16 March 2015

Adam and I like to watch Catfish on the laptop before we sleep. It’s our guilty pleasure. We ooh and ahh over the reveals, exclaiming "she didn’t!" a lot! We have sometimes googled what's happened to the pair if the episode was particularly juicy.

Most episodes involve a vulnerable person wondering whether the person they've fallen in love with online is real. They've been sent photos of (usually) extremely attractive people (or never seen a photo), and formed such a connection with them that they've revealed personal information and in some cases have sent money. They usually haven't video chatted with them, and their chats have either been via text or phone calls. They are rarely connected on social media. And if they live in the same city, alarm bells toll if excuses are made to avoid meeting. Despite not knowing much about the person they love, they have strong feelings for them. a

Catfish hosts Nev and Max do some googling (that image search is amazing!), make a call to the catfish and fly across the country to meet the catfish in person.

Sometimes the relationship works out - it turns out the supposed catfish didn't have a webcam or didn't have the money to fly across the country to meet the person they'd fallen in love with, but most times the relationship doesn’t continue in person.

Generally I feel bad for the person who's been swindled AND the catfish. Because the catfish is just as vulnerable as the person who they've catfished. Even though a lot of deceit has occurred, the catfish usually has esteem, body image or trust issues, and unfortunately they've used someone else to feel love and self-worth. (Something I found out recently was the catfish is often the first person who contacts MTV - not the person who thinks they're being catfished. This link (contains spoilers) has further info about that.)

But a lot of the time, and perhaps because the subjects in the show are very young adults, the relationship ends upon meeting - not because of deceit but because of the way the catfish looks. Often the catfish has used photos of other people, and while they've claimed what they've said about themselves is true, the person that was catfished doesn’t continue the relationship because of appearance. I find this to be highly superficial - especially when an online relationship is based so much on personality and inner beauty. But I can understand how it's so easy to conjure up a visual and emotional image of someone you've met online - because I have been there.

I am always intrigued by a catfish tale (catfish tail!). I spend a lot of time online, and fallen in love online a few times. And of course, I blog. I have, in the past, been reluctant to share my face online, so I can understand part of the catfish's thinking and trickery. And I understand the desire to be loved and admired (more so when I was younger than now). But I can't understand the playing with emotions, and pretending to be someone else.

I am also interested because I’ve sort of been catfished. I found out 10 years ago but it was happening six years before that. I had my suspicions things weren't as they seemed, but a phonecall in 2005 confirmed it all. Why? Because he wanted me to think he was better than he really was. An edited version of my story is below (I wrote it a few years back and wanted to reblog it.)

In online relationships - romantically or if you connect with followers through blogging or an entrepreunerial level - there's the thrill of being loved, of feeling popular outside of real life, and the excitement of having someone to connect with. I've been there, romantically and through blogging. It's like a world that just belongs to you and your online love or followers.

But then there are lies. Pretending to lead a different life, styling a more beautiful and successful life, and pretending to look like what you aspire to is really sad. And we've seen that this past week when a prominent blogger's story unravelled. When the web of lies get so deep, and a public profile is so big, it must be hard to admit the truth. In the case of romantic catfishing, there's a chance of a real romance building, on both sides, even when that wasn't the intention. Whatever the case, catfishing comes down to pretending to be something you’re not. It would be SO hard to remember the lies told and ensure you're consistent with your story. And in the case of prominent people, the Internet never forgets.

Here's my story of being catfished.

I read an article in the Age Good Weekend supplement (originally from The Guardian). It was about creating false identities and illnesses online - Münchausen by internet to be specific. I read it on the train and felt a shudder shoot through my body when I'd finished the article. I became ready to share this story of mine. It's a long one. So stick with it.

He came into my life on Monday 30 August 1999. I'd taken the day off school to listen to radio the debut of the rather appropriately titled I knew I loved you by Savage Garden. I knew I loved him during our first phone call on 10 November 1999, the night before my year 12 history exam. We met in person on Friday 14 January 2000. And I knew I loved him a million times more in the nine days we spent together. We kept in touch, on and off, on his terms, for five years after we met. And in July 2005, the one I still loved wasn't.

‘You’d better watch out for the quiet ones’ was a regular saying of his. He said it to me; he said it to my mother. I wondered what this meant, but did not overly focus on that detail because, to me, he was the world. He was a quiet one, and perhaps that was the reason I found him in on ICQ.

We chatted online for four months before he told me he was beginning to love me. I convinced my parents that this guy wasn’t some 70 year old paedophile (but how did I really know?) and they said I was allowed to give out our home phone number to him. He called me every night for two months, we would speak for up to seven hours at a time. The calls were about our day’s events, how we both loved each other, and how we both had unusual traits about us which made us perfect for each other. We spoke of our future. He sent me generous birthday and Christmas presents - an Opal necklace, a Savage Garden clock (a feat for a Marilyn Manson fan) and a CD of his favourite band, Coal Chamber. I bought him a lava lamp and would write him really long letters.

We arranged to meet in January of 2000 – he came from interstate to stay at my house for nine days. A big expense for an apprentice wage. He had 11 piercings and a penchant to dress like a gothic punk rocker meets the Australian cricket team. My parents, as strict as they are, though reluctant to have a stranger in their home, liked this guy as he was polite, respecting, and taught them how to sharpen their kitchen knives properly.

He was everything I hoped he'd be. Funny, cute, alternative, had a job as a chef, into cool music, smart. Different and eccentric. Gave me confidence. He was a myriad of firsts for me. I felt accepted. And loved. I still remember him and the time we spent together so vividly. He was willing to hold my hand and kiss me. Unafraid to touch me - he knew he wouldn't catch my condition. He accepted me and loved me.

When he left to go home I was devastated. Absolutely devastated. I've never seen him again.

After his stay, we remained in touch via the phone and the internet. We couldn’t continue our romance because he told me he was to become a father. He was also grateful for my online support when his mother died. He called me at ridiculous hours of the night, just to talk.

To be honest, this guy fucked me over. I was 17-18. Impressionable. Naive. Wanting to be loved.

Before we met, he told me he was going to be a father - in early January 2000 he found out his ex girlfriend was pregnant. We spoke for hours that night, we were going to make things work. He cried. I cried. Then I stupidly honestly told my parents, who flipped out. I remember the next day, my Dad was so angry. "He's not Jesus you know", Dad said about my love for him. Still, my parents let him stay after seeing him when he arrived at the airport.

When he left, he got back with his pregnant ex girlfriend. He told me about how badly she treated him, and if she wasn't pregnant we'd be together. And sometimes she'd be logging onto his ICQ account. The baby arrived, a daughter. I sent a card and a dress. He'd tell me stories of what progress she was making - milestones - first steps, pre-school, school. He'd tell me how his girlfriend left him with his daughter to be a single father.

In March 2000 his Mum died. I sent a condolence card to his house. He told me not to talk about my dog that'd just died because it upset him too much.

He told me he still loved me. He told me he wanted nothing to do with me. Then he came back. Months apart. Time after time. Calls at all hours. For six years. I remember saying to Mum that I feel he and I will always have a connection.

I had no reason to disbelieve him. Except for four things. Before we met he sent photos of himself that really looked like him but were actually of a musician. After we met he'd send me poems he wrote, and just by chance (reading a music magazine) I found out they were Marilyn Manson lyrics. I never saw photos of his daughter. And his phone would often go dead when he called me.

Six years after we first chatted online I found out that everything he ever told me was a lie. In July 2005, his then girlfriend called me soon after his phone had gone dead. She'd called before, maybe a year earlier. This time in 2005, the first thing she asked was how I knew him. She was angry. She said my number was all over his phone bills. That he spoke about me a lot.

When she calmed down and found out I was not a threat and didn't know about her (I'd always ask if he had a girlfriend and he said "no, why do you think I'm calling you?"), we got to know each other.

She revealed some truths. There was no baby, his mother was not dead - she actually lived with his mother. The mother of his 'daughter' was a woman he'd met once - and when we contacted her, she was as freaked out as we were.

He seriously fucked me over. While he hurt his then girlfriend - she left him after he 'accidentally' sent me a picture of his penis to my phone - he had shattered six years of my life too. Before I told him I found out his lies (I told him by writing a letter to both him and his parents) he would call me while his then girlfriend was in the other room. Once he called me on my mobile while she was on my home phone.

The only things I really know about him is his name, age, occupation and location. Oh, and that his warning about the ‘quiet ones’ rang true. This ‘quiet one’ was telling similar lies to other girls he met online, though none quite as large has those he told me. He had my love, so I trusted him, but he also had the distance between us in his favour, which meant that I’d probably never find out about his real identity. And he had the benefit of a saved message history to keep track of his lies.

I took it surprisingly well. Of course I was angry, hurt, numb and sad. I can't say I grieved for the man who wasn't - I spent years before that grieving that we weren't together. I can't believe he won my parents over and that he wasn't a murderer. But on the upside I was excited to have a topic for my upcoming journalism assignment.

I asked him why he did it. Why he maintained the lies to me for six years. He said he wanted to be better than he was so I'd love him. I realised he was so unwell, aside from his drinking and drug use. A pathalogical liar. I was lucky my emotions were the only thing he harmed. Looking back, he was a regular impersonator and chameleon - wearing make up to look like his idols.

I've become friends with his ex girlfriend. We met when I was interstate in 2007. She's lovely. We had a few things in common because of his interests - books, music and sayings. We recently saw him on Facebook, looking well beyond his 30 years - so washed up. He has a real baby now. Neither of us have contacted him.

I often wonder if I hadn't found out the lies would I still have put myself through the hard times he caused with his toying? Finding out was a good thing. About a year after I found out his lies he called me at 3.00 am. I told him that I loved not having him in my life and never to call me again.

Even though this awful thing happened to me I am still so willing to form online (often to offline) relationships and trust people I meet on the Internet. I am always cautious though. You've got to watch the quiet ones.

In 2000 I wrote this poem. And it now reminds me that his lies being revealed meant I was no longer alive just to please him.

draw a life, name it blue
because sometimes it’s that way
and place me in the corner
I’ll be the one you can play with
when you’re sick of it all-
looking for something more
and I’ll obligingly return
when you tire of me
I’ll bathe in misery
to have the smallest part of you
do you want me for my plumage,
or for the idea that
I could make your mind
fly?

Edit: someone asked me had I read this aged 17, would I have thought my catfish was different? I don't know? But I was so desperate to be loved that I don't think so. I would have chased that love.

12 March 2015

The impostor syndrome haunts me. "Is this my life? Am I really writing and speaking about my passions?", I sometimes ask. Am I qualified? Am I nice enough and a good role model at all times? I keep thinking I'll get caught out. Not that I think have anything to get caught out for, but I worry that someone will comment on something that I've written, saying 'I saw her once, she was really rude to this sales assistant'. I am flawed too.

I remind myself that people won't always like (which is different to won't agree with) everything I write, and sometimes I tire of having to validate that stigma and intrusive comments really do happen. But that's ok. Because I am ok with myself.

Sometimes I worry about being a health blogger - especially this week. It’s a huge responsibility to have people read about my life and take advice or comfort from it. I want to show my integrity.

There's a rise in health and wellness bloggers - many of which have reached celebrity status. And celebrities have now reached medical practitioner status. As my friend Anne Marie said, introducing this article, "get your medical advice from a doctor, not from a celebrity" (or blogger). These people are not qualified to dispense medical advice or treatments - they are social media celebrities.

"What's dangerous here is not just the people who damage themselves with their inauthenticity but the damage it does to those following, admiring and emulating."

If you are following advice from an illness or heath blogger, and you think something doesn't add up, check your facts. Ask your doctor. Seek qualified treatment before it does you harm. Emma Stirling, registered dietician, has written a great blog about reputable information on cancer treatment here.

I don't have cancer and I don’t practice alternative treatment over traditional medicine. But I do have a lifelong, severe chronic illness and people look to me for advice. I feel that I have a responsibility to you, my readers and social media followers, never to provide advice that might damage your health. I always write my truth, which doesn’t mean it will apply to all readers.(And I don’t write this to discredit myself, but in the interests of disclosure, I am qualified in Communications and eCommerce, and only have lived experienced with Ichthyosis and disability.)

And I never want to sell you treatments or life-practices to help Ichthyosis (or any other illness). I won’t be paid to promote pharmaceutical products, or feature affiliate links to over the counter products. (Sometimes I will promote non-skin related products through a sponsored or affiliated post or ads, but I will always disclose up front.)

I am not a doctor. Or a psychologist. I can't provide a diagnosis. There are many types of Ichthyosis and there are many treatments that work differently for different patients. What works for me might not work for you or your child. And I don't want to risk that. And I will never claim that going to a hot spring or taking a juice cleanse will make you well.

I believe in, and promote healthy eating, but that is just one part of health management. I never want to seem like a medical authority. While eating whole foods makes me feel good (and has a positive impact on my skin), my Ichthyosis is still here - it’s not cured because I eat salmon and cheese regularly (they both give me GREAT skin!) Sure I can share what's worked for me, or how I cope emotionally, or write about my experiences of discrimination, all of which you may relate to, but in the end, people need to get the accredited help they need. I have written about my treatment regime, but I have and will always suggest you seek medical opinions before trying new things. I will also suggest you see a counsellor.

There has been a few times that I have been contacted, urgently, to provide advice about a treatment for Ichthyosis, or even a diagnosis. When I have told them I am not a doctor, and that I don't live in their country so I'm not even sure if the creams I use are available where they live, and suggested they talk to a dermatologist, they dropped me like a hot potato. I was not useful to them.

Last year I was contacted by a woman who expected too much of me. She had diagnosed (and then undiagnosed) herself from my explanations of Ichthyosis. And she wanted more emotional support than I am qualified for, and when I told her I couldn't provide it to her, she said I'd disappointed her. She said I'd put myself out as a role model, and she saw me as a support person, but didn't provide. My heart sank. While I know I didn't fail her, I still felt as though I did. It upset me a lot.

These examples are burdens on genuine illness and health bloggers. And they can hurt.

I admire those illness and health bloggers who are genuinely making the world a better place by responsibly sharing their stories online. And I am disappointed in those who take advantage of the vulnerable. There is no health blogger’s rulebook or union. I’m winging it. We all are. So I’ve made my own pledge to do the right thing by health bloggers, my community and my values.

I am a health blogger. I will:

Be truthful about my illness, and accountable to the charities and causes I support.

Maintain respect and privacy for the professionals who treat me.

Always encourage a healthy diet and lifestyle in conjunction with medical and psychological support.

Link to support groups that may help you.

Never claim a food or life-practice will cure you.

Never receive payment to endorse prescribed and over the counter treatments that I use for my skin (this includes affiliate links).

Write about what has helped my skin, but always provide a recommendation to seek advice from your doctor before trying new things.

Own my writing and my mistakes.

Acknowledge that all patients have different symptoms and levels of severity - and what works for me might not work for them.

Continue to foster a positive, supportive and educated online community.

Seek help if I am experiencing vicarious trauma from others sharing their stories.

11 March 2015

It's no secret I love cheese! And I am so lucky that Adam loves it too! I can't imagine marrying a man who didn't love to sit on the couch and eat three different cheeses on a Friday night.

I bought him a cheese kit for our first anniversary last October. The kit includes a recipe book, some sterilising solution, salt, a thermometer, some spoons plus cultures and rennet. We've only just had a spare Sunday to use it. This basic kit has about seven recipes, and the cultures and rennet is enough to make seven lots of cheese.

We decided on the quark - with a difficulty rating of very easy.

First we heated milk and culture to 30 degrees. Then we let it sit for 24 hours. That was a little boring, I admit.

Because I am about full disclosure. I will let you know this first batch did not work. I heated the milk too fast. After leaving it to sit, it turned into sour milk, and smelt terrible. I have a strong aversion to milk (yet love cheese - I don't get it?!) and so I am thankful that Adam disposed of the milk and cleaned up!

Adam did some googling and found a more comprehensive recipe. And it worked! This is after it was strained through cheesecloth over the sink overnight. He is Master Cheesemaker!

We seasoned the cheese with basil and green chilli and served it on homemade bread. It was so delicious. Soft and tangy. Creamy. Healthy. We'll definitely be making more cheese!

"...it is inexcusable to allow a child to treat other people badly. Teaching a child to be disrespectful is a habit that can’t be broken."

They say it takes a village to raise a child. But I am always mindful of commenting on parenting, because I'm not a parent. And there's often a backlash when people who aren't parents comment on others' parenting. But when I encounter children, it is easy to judge how they're parented based on their behaviour and reaction to me. I recently met a little girl who initially stared at me, but after I said hello and her parents encouraged her to say hello back, we chatted about lots of things including Frozen, and a new subject at her school called 'snacks' (hah!). When I left the cafe, I told her dad how lovely his daughter was, saying he's done a great job!

Dealing with children can be so hard. Sometimes they ask cute and innocent questions - out of genuine curiosity. I don't mind if they ask what's on my face or stare a little. I recently experienced a gorgeous moment when a little girl couldn't work out why my face hadn't changed colour when we exited the train tunnel - and then she was more shocked that I was 32 yet still carrying a Minnie Mouse bag!

Other times children are downright rude. Little shits. To me and to other kids (and adults) who look different.

Most days I read about friends' children who have been bullied and excluded because other kids think they'll catch ichthyosis. I tear up when friends write that no one attended their child's birthday party. And I'm horrified to learn that children (and adults) ruin outings for my friends' children because of incessant staring, whispering and comments.

Those things happened to me when I was a child, and the memories stuck.

And often children's comments hurt just as much for an adult on the receiving end.

Sarah, a 20 something woman with dwarfism, was exasperated by a child who mistook her for a boy and commented on her appearance. She gets stared at and comments directed at her regularly, so I imagine that having her femininity overlooked stung.

Mel, a gorgeous dancer and mentor (who has Cerebral Palsy) wrote this on Facebook last week:

“I like to think in today's society that perception of "disability" has grown for the better, though after yesterday's experience, I am doubting myself it has... wheeling past a primary school ground some children were eager to know "what's wrong with you" and so I naturally responded with my natural speech, "I....have.....cerebral palsy" then came the laughter when they heard my speech, and then a boy did the body movement, tongue out, eyes roll which he appeared to be very good at….

so my explaining was not working right now and I wheeled on with my friend who was equally disappointed by the children's attitude... I wanted to do something to help these children understand, my world is amazing and not what you think it is.”

While people dismiss children’s behaviour as curiosity or innocence, reactions like Mel received can sting. Mel has since written to the principal, asking if she can do a presentation on disability.

I have become better at responding to children (smiling, saying hello, talking about how everyone's different, saying I was born like this as they were born with blue eyes) but I still struggle with whether to invite questions from them or call them out on downright rude behaviour.

I was on the train one day and a little kid saw me and threw an absolute whopper of a tantrum. He screamed that he didn't want to look at me or sit next to me. He kicked the inside of the train, hit his dad, and said how yucky I looked. It was really embarrassing because people were looking at me to see what the boy didn't want to look at. And I had to say something. Because his father wasn't saying anything. I said to the boy that he was very rude. I told his dad that I write about what it's like to look different, including how to educate kids about diversity, and gave him my card, suggesting he talk to his kid so this doesn't happen again. The dad thanked me and got off at a stop I presume wasn't his stop, because the kid - mid tantrum - said this wasn't the right stop. The dad was so embarrassed. And so was I.

Mother of three, Toushka, told me:

"In the case of visible difference and disability and the lifelong conversation we need to have with our children, it can be difficult to find ways to have that conversation if the circle of people your child sees are all the same. There are some great books and TV shows to help but it is a lifelong conversation that hopefully starts before a toddler freaks out on the train."

I don't want to parent your child.

I can educate your child about my skin to an extent, but it's up to parents to teach them manners, kindness and compassion.

And you also need to remember that while curiosity is important for learning, being on the receiving end of curiosity can be tiring.

It's up to you as parents to have that ongoing discussion about diversity and need to treat people - no matter how they look - with respect. Because when a situation like the one I had on the train happens to you, you'd wish you had.

Edit: a number of people on my Facebook page and blog comments suggested the child on the train might have autism. Thanks for raising the idea that the boy on the train might have autism. This is something I had not considered. I appreciate you opening my mind to this, and I am sorry if I offended anyone with my comments. If autism had have been the case, it would have been great for the father to provide a short comment like "my son has autism and this could be why he is behaving this way', as I provided a comment to him about me. Please also respect that the incidents that I mentioned - that happen to me and my friends Sarah and Mel - did happen, and often happen on a regular basis and can be tiring. Thank you.

06 March 2015

I googled an article I'd written (to reference it for something else) and found my work plagiarised.

A disability organisation plagiarised my article. This is the second disability organisation in two weeks to steal that article (it was the article about disability and fashion) - and the third time a disability organisation has taken my work. (And it's happened to my friends too.) While there was a link to Daily Life below the text, there was no link to my blog and the format of the article made it look like I had written for that organisation.

Generally my editor takes care of plagiarism but this time I called the organisation. The organisation was surprised to hear from me and the woman on the phone didn't know what to say.

I told the woman that by taking my work without permission or proper credit or payment, it's devaluing my writing. It's devaluing the disability community.

I said that I spend many hours writing quality work outside of my day job (most unpaid) and while I love my work being shared, I don't love it being shared inappropriately and not being compensated for it. And I added that if this is happening with my writing, I'm sure it's happening to other writers.

I talked about copyright law and suggested that if the organisation wants to link back to articles they like, they include a short quote from it with a clear link to the original source.

The woman was very apologetic (she didn't know this was happening and thought they complied with copyright law well) and will review all website content and remove my article. She said the plagiarism goes against everything the organisation stands for. And she was incredibly embarrassed. (She also told me she is an avid follower of my work and said she was a little 'starstruck' to hear from me in person!)

I understand in all cases the intent was not malicious but generous. The intent was to share with its members and the disability community, and to increase accessibility of the articles. That's great - but I'd hope original content is shared within copyright guidelines, and not replicated in full. Replication of original content can decrease the author's Google ranking. And a higher ranking (on any site) ain't going to pay the bills!

That phone call felt so empowering. Yes, I could have let my wonderful editor deal with it, but I took ownership and I feel like I am singing Katy Perry's Roar.

If it was a student or for-profit company who plagiarised my work, I would have been angry. But for a disability organisation doing this - an organisation advocating for the rights of people with disabilities - makes me sad. And I know that plagiarism happens for many writers, but in this case, it's the principle that people with disabilities shouldn't be expected to write for free.

This misappropriation of disabled writers' work perpetuates the idea we should be grateful for exposure. It's expecting us to work for free, and assuming we won't speak up. It's using lived experience freely for someone else's gain. It's taking advantage. The very thing that a disability organisation helps protect people from.

04 March 2015

Every time my readers introduce themselves to me, I walk away with a huge grin which stays for a while. They are always so nice. I love it! The excitement of meeting readers is still a novelty. I remember the first time it happened, in 2010, as I was crossing the road. So. Exciting.

On the train this week: a woman saw me, sat near me and said:

"Are you Carly Findlay? I read your writing in Daily Life and wanted to say you are kick arse. More people need to own who they are." So lovely!

Last Wednesday was bookended by two highlights:

A reader of Peppermint Magazine introduced herself and shook my hand on the train platform in the morning. We chatted all the way to the city.

And then as I sat in the sunshine for a few minutes before going home, a Tweeter stopped to say "Just letting you know I follow you on twitter and I love everything you write.”

When I went to the gallery to see JPG, two lovely blog readers stopped me to say hello. One was so giggly when she told me she reads (and enjoys) my blog. And the other one made for a hilarious encounter - she stopped me to say “I don’t want to ruin your day but I just love your blog!”. I was with Charlotte and she was about to get defensive when this lady started with ‘I don’t want to ruin your day”. And then we had a quick chat, and giggle - it was so funny!

And last week I went to a lecture by US academic Beth Haller - she and Kath Duncan talked about disability representation in the media. It was so informative - I found out about lots of TV shows featuring disabled characters. Beth's last slide was referring to my Daily Life article about disability and reality TV! I squealed in the lecture and after it finished, Beth asked if she could take a photo of me under the projection! I think she tours this lecture too! And the next day I emailed my editor with this picture!

Sometimes I get tweets or messages after someone has seen me, saying they’d seen me but were too shy to say hello! I am sad when that happens because I hope to always be approachable. And I always want to find out about you, my readers. Please say hello!

These interactions are SO nice. Never underestimate the power of stopping to say hello and pay a compliment to someone you recognise or admire.

So if you see a blogger, whose writing you like, walking past you in the street or at the art gallery or on the train, say hello to them! I guarantee it will make their day!

02 March 2015

I did a fun thing for the Digital Writer's Festival - I was involved in the Extraordinary Routines event over the weekend. I shared my writing routine though photos on Instagram. While I have often talked about how I write, I thought I'd share the photos of my routine here too!

1) Reading.

The first thing I do when I wake up is read. I read the news online or read the newspaper if I'm out for breakfast. Reading about current issues gives me ideas for writing - and at the least, posts to share on social media.

2) Photographing food.

I am really active on social media between blog posts. And I love food. So I photograph most of my food. My fiancé says I have photo taking face and he mimics me when I do this. I use these on instagram. I used to blog about food a lot more before the focus of my blog narrowed.

3) Tools.

I use Apple products to write. I love that I can write on my phone on the train and when I get home, I can resume that piece of writing on the computer as everything is synced. I mostly write through the notes function that Mac provides. I have hundreds of notes stored - partial and finished blog posts, links to articles, copies of Facebook statuses that could be used for blog posts, to-do lists, reminders, song lyrics...

I write all blog posts in the notes function, and if I am writing for another publication, I will send my writing to my editors in a Word document. I wrote everything on an iPad for a good two and a half years, but that got tiring switching between apps, so I recently bought a new McBook. I also have a notebook for when I just have to get something down (it's usually at my desk at my day job). My handwriting has gone from perfect to doctors' scrawl since school.

4) Playing.

I am constantly on the lookout for photo opportunities so I have pictures to use on a blog post. I like quirky and interesting things, and sometimes these pictures are enough to inspire me to write. We had a weekend away and these giant paint brushes and pots were at the hotel we stayed at. I took some photos and I asked my fiancé to take some of me playing, just for fun.

5) Writing in bed.

Most of my writing happens in bed. Not a very good example of OHS, I know. But it's comfortable for me (for now) and when I am sore, I can still write in comfort. I tend to batch write blog posts - writing several posts at once on the weekend (sometimes over a bottle of wine) so I have blog content for weeks ahead, and so it frees me up to write paid pieces at night. I also write when the inspiration strikes, and I love that it can be done anywhere - on the train, in bed, in front of the TV. I don't need silence to write, I usually listen to podcasts.

6) Napping in bed.

Writing in bed often (always) leads to napping in bed. Oops. I maintain it's part of the writing process!

7) Blog post.

I often warm up to writing something big by writing something small. Sending off an email, writing a Facebook status, and writing a 200 word blog post like this one. And then I write the bigger piece, and get into the flow. I love when that happens - seeing the finished product makes me feel so accomplished.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.